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Hello Christine

 

Let us know when the results come through, it would be great if you finally get an answer!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Now waiting for the gastro. doctor to send me an appointment .

 

But I now know I am not as bad as some people. But it's a nuisance; I now spoke to the nurse and she said weakness? Good news I don't have Primary Sjogrens .

 

So hope I have my appointment soon for gastro. doctor .

 

Christine

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Hello Christine

 

That's good news about nor having Sjogren's but if you did have it you would have had Secondary Sjogren's not primary because you already have scleroderma as your primary disease.

 

Let us know what the gastro doctor comes up with for you as they should have some treatments that can help ease the running to the toilet at least!!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Folks

 

Well have the appointment now for the gastric doctor. I am little embarrassed about going. I know my problems are there but at moment it's not too bad, I would say I have problems but they are mild still.

 

I just hope I get there and it's not a waste of time. I eat well most of the time but if I am out or away it's easy to fall into the no veg and fruit trap. I have scleroderma with R/A both mild.

 

Christine

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I also have bowel problems and was for years treated by a gastroenterologist (who just said I had IBS and could do no more for me!) but once my rheumatologist got involved we are trying other things. I am also on esomeprazole for acid reflux. I have weak sphinchers (top and bottom) but leakage is my problem. I am currently taking no meds, but have tried a combo of loperimide (Imodium) and Domperidone (laxative). The problem is because of slow movement of the bowel, when I take the imodium I grind to a halt, then have to take a laxative to get going again. I can't get the balance right so give up ;)

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Hello Tina

 

Domperidone isn't actually a laxative, it's primary use is as an anti sickness drug and like most anti sickness drugs it makes the stomach empty its contents quicker, it speeds up motility of the stomach and I guess also the bowels which is why it is often give to people with scleroderma who have motility issues like yourself.

 

It may be time to return to your rheumatologist and ask for referral to a gastroenterologist as you need to try another combo as the one you are trying isn't working well enough for you. Have a read of other threads about leakage here, here and there's a bunch more here.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I should also have said that I use a stimulant laxative as well - you are correct about the domperidone, but I didn't find it very helpful. I think one of the most helpful things the doctor did was give me 'permission' to take a laxative at the same time as loperimide. I am still struggling however.

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Ditto on the domperidone, I found it useless as well and have never come across anyone who has actually found it helpful!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Well, Amanda now you have. I take Domperidone twice a day every day and wouldn't be without it. I don't use it as a laxative but as an emetic. It settles my gastritis and stops the sudden vomiting. Once 2 or 3 years ago I ran out of it and thought it didn't really make much difference, and I hadn't had a vomiting episode for ages anyway.

 

We went away on a Car Club weekend in the backblocks, and guess who was in real strife by Sunday morning. It was a long weekend and we were so far from civilisation that even if there had been a Pharmacy it wouldn't have been open. Since then I have been VERY careful to make sure I have enough on hand at all times.

 

Tina

 

I have similar problems to yours and I can sympathise. My sphincters are next to useless and over the years I have had surgical repairs but now I am in the throes of having an SNS. That is a Sacral Nerve Stimulator. I have had the sensor implanted at the base of my spine and I was testing it with a temporary controller when I fell ill with a small bowel blockage. That was in early February and after most of a month in hospital and almost 2 months home I now have an appointment to talk about when the permanent controller is to be installed. That is just an overnight in hospital then a couple of weeks healing and then we shall see if there is any improvement.

 

What I have been told is that most people to have some improvement and some people have a great improvement so I am hoping.

 

In the meantime for the past couple of years I have been using a stool bulking agent. It is in powder form and is stirred into a 200ml glass of fluid. It tastes fine and I find it makes a huge difference. When I was on Nil per Mouth in hospital I couldn't have it of course and actually didn't notice until I was allowed to eat again, then I knew all about it!!!!

 

I wouldn't take Imodium regularly, I suspect it is not particularly good for you long term. Not only that, when I did take it once or twice it just made me throw up.

 

Don't give up, have you talked to a Colorectal Specialist. You would find them to be very helpful and quite used to these sorts of problems. I was sent to a Uro-genital Physiotherapist - the sort who comes after childbirth - and her advice has been very informative and useful.

 

Best wishes

JudyT

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